Today WAS the day

Today was supposed to be a big day for us. First, Founders day at Perkins, an assembly put on by the students that I was really looking forward to, and then we were due in clinic to discuss treatment options. I have been pretty anxious about this appointment as I am starting to feel like we are loosing our opportunity. The longer we let the tumor grow the harder it is going to be to get a hold of it. He has been doing fairly well the past few weeks so I figured we should do something. I have been anxious about hearing what the team has to say, will they agree? Is there anything left worth trying? Will they tell me its too late? Specifically we have been talking about a trial at Dana Farber that is supposed to be opening soon. We have been waiting for Kai’s tumor biopsy to be screened to see if he qualifies. I was HOPING we would have this answer today. I was hoping we would make a plan today.
As usual Kai had a plan of his own. After having a great week with lots of alertness and smiles and good food intake, he suddenly wasn’t himself the past few days. Yesterday he was content to be siting by himself doing nothing with no one else around. This is VERY unlike him. Typically we can’t ever put him down. In fact I had my mom and Ashley over yesterday just so I could clean the house, one to hold Kai and one to help keep me focused. It took three people to clean 1.5 rooms, cook two meals for my fridge and care for Kai! While we were busily working to get things done Kai was developing a low fever.
He has been having episodes the past few nights where he wakes up from a sleep and starts screaming and shaking. I felt like it may be his stomach but there was really nothing I could do to help him except give him more pain meds. He did this the past two nights in a row and last night he was so worked up he was even turning a little blue. After this episode last night his fever was hovering around 101.5-101.7 for several hours. At around 10:30pm I decided to call the doctor and of course they told us to come into the ER.
There’s nothing quiet like a midnight drive to children’s hospital.
And as mommy law always has it, by the time we got to the hospital the fever was down and it looked like I was making a big fuss about nothing at 1:00am on a Sunday.
Since I was worried about his stomach they took an X-ray to rule out a blockage or perforation, and thankfully everything looked fine.
The drew some labs and started him on IV antibiotics, which will keep us here at least one more night.